Monday, November 24, 2014

Week 66: Billion with a B

It's hard to believe that tomorrow we're heading "home" to Boston for Thanksgiving. Traveling with a child is one of those things that doesn't seem to get easier with practice. Lemon's needs keep changing and we have to change to keep up. Plus, I think in between each trip, we forget how much work the previous one was, and are shocked anew at how much stuff it takes to travel with a child. This will also be our first plane trip since Lemon learned how to walk, which should put it in its own special category.

It's also our first trip away from Wisconsin in the winter, so for the first time we've had to deal with things like "What do people who own houses do about clearing the snow when they go away?" and "Where do you get those timers that you plug the lights into to make it look like you're home?" The second one is of course easy, amazon.com of course. Which brings up a good point as you are thinking about spending a small fortune at amazon buying all your Christmas gifts this coming Cyber Monday. If you start your purchase at smile.amazon.com, amazon will donate some very small percentage of the total value of your purchase to a charity of your choice--like the Cystic Fibrosis Foundation. Costs you nothing and gives kids like Lemon more tomorrows, so why not?

The CF Foundation was actually in the news this week, after receiving a $3.3 billion (yes, billion with a B) payout from the sale of future royalty rights to the portfolio of CF drugs being developed by Vertex. In what is now called "venture philanthropy," the CFF gave money to Vertex to finance the development of CF drugs, with the agreement that the CFF would get a share of the royalties on any drugs developed. The first such drug, Kalydeco, is now on the market and many more exciting medicines are coming along in the pipeline. Rather than wait for the royalties to trickle in over the next 20 years, the CFF sold the rights to the royalties to an investment firm so it could have access to all the cash right away. The money can now be reinvested in further research, and the other services that the CFF provides to CF patients. Although some have questioned the CFF's for possible conflict of interest(the cost of Kalydeco is currently $300,000/year, and the high price might be related to the high value of the royalties), my feeling is that this is pretty much a huge win for the CF
community. After all, what other rare disease right now has a $3.3
billion research budget? I feel like if it's possible to buy enough
research to find drugs for all CF patients, money won't be our
limitation now. So much progress has been made in the last decade, and
I'm excited to see what this new bolus of funding will bring in the
decade to come.